Choosing a Trustee for a Special Needs Trust

Most families do not need to follow every new court decision, Medicaid rule, tax election, or change to federal retirement law. That is our job. What families do need to know is when one of those changes could affect a decision they are making right now. After reviewing materials from the 2026 Elder Law Institute and additional training on post-death tax and estate planning, our team identified several developments that deserve attention. Some affect people planning for a loved one with special needs. Others may matter to families navigating Medicaid, administering an estate, or ensuring an existing estate plan still works as intended. Here are five groups of people who should be paying particular attention. 1. If You Have a Loved One With a DisabilityOne of the biggest developments involves ABLE accounts. Beginning in 2026, eligibility expands so that an individuals disability must have begun before age 46 rather than before age 26. That may sound like a small change, but it could open the door for individuals and families who previously did not qualify. ABLE accounts can be an important part of special needs planning because they may allow an individual with a disability to save and use money for qualified expenses while preserving access to certain public benefits. For families who were previously told that an ABLE account was not an option because of the individuals age when the disability began, it may be time to revisit that conversation. The important question is not simply, Can we open an ABLE account now? It is, How should an ABLE account fit into the rest of our planning? That may include a Special Needs Trust, beneficiary designations, public benefits, housing assistance, family support, and the long-term financial needs of the person you love. 2. If a Retirement Account Will Eventually Benefit Someone With Special NeedsThis is an area where families can have excellent intentions and still create an unintended problem. You may have spent years carefully creating a Special Needs Trust to protect a child or loved one with a disability. But then there is the IRA. Or the 401(k). Or another retirement account with its own beneficiary designation. Those beneficiary forms matter. Retirement accounts are governed by their beneficiary designations, and coordinating those designations with a Special Needs Trust can involve additional rules involving inherited retirement accounts. That means creating the trust is only part of the job. The beneficiary designation needs to work with the trust and with the rest of the estate plan. This is one reason we place so much emphasis on follow-through. A beautifully drafted estate plan cannot accomplish what you intended if the assets never make it to the right place. If your estate plan includes a loved one with special needs and you have significant retirement assets, this is worth reviewing. 3. If You Are Helping an Aging ParentFamilies helping aging parents already have enough to manage. There may be medical appointments, medications, housing decisions, caregiving, finances, insurance, and questions about whether additional care will eventually be needed. Medicaid adds another layer of complexity. There are upcoming changes involving Medicaid eligibility and administration that could affect how families prepare, when applications should be submitted, what documentation will be needed, and how much room families have to correct problems after the fact. Pennsylvania is also continuing to develop options involving Medicaid-funded assisted living, which raises another set of practical questions. Which facilities are actually participating? Is there availability? What level of care is being provided? How does the program work in the real world, not simply on paper? Those are the questions families need answered. There are also Medicaid programs beyond traditional nursing home Medicaid that may help certain individuals, including programs connected to disability, employment, Medicare costs, and other circumstances. The difficulty is that most families do not know which questions to ask. That is why waiting until a parent is already in crisis can make everything harder. If you are starting to notice that Mom or Dad needs more help than they used to, that is often the right time to begin learning about the options available. 4. If Your Spouse or Parent Recently DiedFamilies understandably want to get things handled after someone dies. Close the accounts. Transfer the assets. Distribute the inheritance. Sell what needs to be sold. Finish the estate. But moving too quickly can sometimes eliminate options that should have been considered first. There may be decisions involving inherited retirement accounts, tax elections, disclaimers, portability between spouses, cost basis, business interests, trusts, and other assets. Some of those decisions have deadlines. Others can be affected by whether an asset has already been distributed or accepted by a beneficiary. That is why we believe one of the most important parts of probate and trust administration happens before significant distributions are made. A family may be asking, How quickly can we get this money distributed? Our first question may need to be, Is there anything we should review before we do that? Estate planning does not necessarily end when someone dies. In some situations, there are still important planning decisions available to the family afterward. 5. If You Are Serving as an Executor or TrusteeBeing named executor or trustee can feel like an honor. Then the work begins. Suddenly you are responsible for property that is not yours, money that belongs to an estate or trust, deadlines you may never have heard of, beneficiaries who want answers, and legal duties that can create personal consequences if handled incorrectly. Executors and trustees may need to address issues involving distributions, taxes, creditors, conflicts of interest, business interests, retirement accounts, notices to interested parties, and the eventual closing of the estate or trust. And one of the biggest mistakes a fiduciary can make is assuming that every reasonable-looking decision is automatically a legally appropriate one. You do not have to become an estate administration expert overnight. You do need to understand your role before making major decisions. That is especially important before distributing money, selling property, transferring business interests, or taking actions that may be difficult to reverse. You Do Not Have to Keep Track of Every ChangeEstate planning and elder law continue to evolve. Some developments require immediate action. Others deserve a closer look. Still others simply need to be monitored until the law becomes clearer. Our responsibility is to know the difference. When our team attends continuing education programs or reviews new developments, we do not want that information sitting in a binder on a shelf. We ask a much more practical question: Does this change anything we should be doing for the families we serve? Sometimes the answer means updating a checklist. Sometimes it means reviewing a beneficiary designation. Sometimes it means slowing down before an estate distribution. And sometimes it means reaching out to a family because an option that did not exist for them several years ago may be available today. You do not need to understand every new development in estate planning, Medicaid, special needs planning, or estate administration. You need to know whether the changes affect your family, your plan, or the decisions you are about to make. If any of the situations above sound familiar, the next step is to learn what applies to your circumstances before making a decision that may be difficult to undo.  

Most people think of estate planning as something that matters after death. You sign a will, create a trust, name the people you want to make decisions, and hopefully walk away feeling like you have taken care of your family. But one of the things I have learned over the years is that the true test of an estate plan often comes much sooner. What happens if you are suddenly hospitalized and cannot manage your finances? What if your spouse or adult child needs to speak with doctors on your behalf? What if your trustee knows they are supposed to help, but has no idea where your important information is located? These are not situations any of us enjoy imagining, but they are exactly why good estate planning matters. At Bellomo & Associates, we believe estate planning is about much more than preparing for what happens someday. It is about giving the people you love clarity, confidence, and direction when life does not go according to plan. A Strong Estate Plan Plans for Incapacity, Not Just DeathOne of the biggest misconceptions about estate planning is that it is primarily about what happens after someone dies. In reality, some of the most stressful situations families face happen while someone is still very much alive. A stroke, serious accident, dementia diagnosis, or unexpected illness can quickly leave a family wondering who is allowed to pay bills, manage property, speak with financial institutions, communicate with doctors, or make healthcare decisions. And this is where we often see families surprised. Being someones spouse, son, daughter, or sibling does not necessarily give you automatic legal authority to step in and handle everything. Imagine a daughter whose mother has suffered a serious stroke. She knows her mom incredibly well. She knows what bills need to be paid. She knows where she banks. She knows what her mother would probably want. But knowing what needs to happen and having the legal authority to make it happen are two very different things. A properly prepared durable power of attorney and appropriate healthcare documents can help close that gap. They allow the people you trust to step in when needed, rather than forcing your family to figure everything out during an already frightening time. That is what good planning is meant to do. Choosing the Right People MattersEstate planning documents are only as effective as the people chosen to carry them out. Depending on your plan, you may need to select someone to serve as your financial agent, healthcare decision-maker, executor, trustee, successor trustee, or guardian for minor children. Most people begin with a simple question: Who do I trust the most? That absolutely matters. But I often encourage families to go one step further and ask, Who could realistically handle this responsibility during a difficult time? The person you love the most may not always be the person who is best equipped to manage finances, communicate with family members, work with attorneys and accountants, keep records, or make difficult decisions under pressure. You want people who care about you, but you also want people who can carry out the job. It is equally important to name backup decision-makers. Life changes. Someone willing and able to serve today may not be able to do so years from now. A strong estate plan thinks through those possibilities before they become a crisis. Give Your Decision-Makers the Information They NeedNaming someone in a legal document is an important first step, but it should not be the last one. Imagine learning that one of your parents is hospitalized and you are now responsible for helping manage their affairs. You know you are the person they selected. The problem is, you do not know where they bank. You cannot find the insurance information. You are not sure where the original estate planning documents are located. You do not even know which attorney helped prepare them. That creates unnecessary stress at the exact moment your family needs less of it. The people you select do not necessarily need every password and account number today. But they should know where important information can be found, who they should contact, and what responsibilities they may someday be asked to handle. A legal document gives someone authority. Organization gives them a roadmap. Your family deserves both. Healthcare Planning Requires More Than PaperworkHealthcare directives are an important part of any estate plan, but there is something else that can make those documents much more powerful: a conversation. The person you select to make healthcare decisions may someday be asked to make choices under incredibly emotional circumstances. Think about the weight of that responsibility. If you have never discussed your wishes, your loved one may be left wondering, What would Mom want? or Am I making the right decision for Dad? Talking about your values ahead of time can give them tremendous peace of mind. What does quality of life mean to you? Are there circumstances or treatments you feel strongly about? Who would you want involved in important medical conversations? Are there personal, religious, or family values you want considered? The legal document may give someone permission to make a decision. The conversation helps them understand the decision you would have wanted. Make Sure Your Trust Is Actually Connected to Your AssetsCreating a trust can be an important part of an estate plan, but signing the document does not always mean the work is finished. Depending on your plan, assets may need to be retitled, assigned, or otherwise coordinated with the trust. This is an area where families can run into trouble years later. A couple creates a trust and leaves the attorneys office feeling relieved. Then life keeps moving. They buy another property. They open a new investment account. They change banks. Years later, something happens, and their family discovers that some of those assets were never properly connected to the trust. Documents alone do not move assets. Follow-through matters. That is why trust funding and ongoing asset coordination should be viewed as part of the estate planning process, not an afterthought. Review Your Beneficiary DesignationsBeneficiary designations are another area that families sometimes overlook. Retirement accounts, life insurance policies, annuities, and certain financial accounts may pass directly to the beneficiary named on the account. That means the beneficiary form can sometimes control where an asset goes, even if your will or trust says something different. Imagine someone who divorces, remarries, and carefully updates an estate plan to reflect a new chapter of life. Everything looks right. But one old retirement account still lists an outdated beneficiary. That one piece of paper can create a result nobody intended. A strong estate plan should look at the whole picture, including wills, trusts, beneficiary designations, account ownership, insurance policies, and real estate. Ideally, every part of the plan should tell the same story. Special Family Circumstances Require More ThoughtFamilies are wonderfully unique, and estate plans should reflect that. Blended families, minor children, beneficiaries with disabilities, family businesses, financially vulnerable loved ones, property in multiple states, or complicated family relationships may require additional planning. For example, leaving money directly to a loved one who receives certain means-tested public benefits could create unintended consequences. In situations like these, the question is not simply, Who should inherit? The better question is, What is the best way for this person to receive what I want to leave them? That is a very different conversation. Good estate planning takes the time to understand the people involved, not simply the assets on a spreadsheet. Keep Your Estate Plan Organized and CurrentEven the best estate plan becomes harder to use if nobody can find it. Your family should not have to become detectives while grieving, sitting in a hospital, or trying to manage an emergency. Important documents, financial information, insurance records, professional contacts, and property information should be organized so the appropriate people can locate them when needed. Your plan should also grow and change with you. Marriage, divorce, births, deaths, moves, retirement, business changes, health concerns, major financial changes, and changing family relationships can all affect your estate plan. A plan can still be legally valid while no longer reflecting the life you are actually living. At Bellomo & Associates, we often remind families that estate planning is not something you finish once and forget about. It is a process of making sure your plan continues to protect the people you love as life changes. Would Your Estate Plan Work Tomorrow?A well-prepared estate plan cannot eliminate every difficult moment. It cannot predict every illness, prevent every disagreement, or guarantee that life will unfold exactly as we hope. What it can do is create clarity. Someone has the authority to act if you become incapacitated. Your healthcare wishes are documented and understood. Your assets work with your plan. Your beneficiary designations reflect your current wishes. The people you selected understand their roles. Your family knows where to turn. And sometimes, that clarity is one of the greatest gifts you can give the people you love. So instead of asking only, Do I have an estate plan? ask yourself a slightly different question: If something unexpected happened tomorrow, would the people I trust know what to do, where to look, and whether they had the authority to act? If you are not completely sure of the answer, that does not mean you have failed. It simply means there may be an opportunity to make your plan stronger today, while you have the time and ability to do it thoughtfully.  

Dolly Parton left behind an extraordinary career, incredible generosity, and a lasting impact on millions of people. Yes, she had wealth, but that is not what made her legacy remarkable. What made it remarkable was how intentionally she used what she had. She knew what mattered to her; she acted on it, and she built things that continued helping people far beyond the moment. That is the lesson. You do not need Dolly Partons money to leave a meaningful legacy. You do need to decide what matters to you. Dolly Gave Children Books. The Bigger Legacy Was Opportunity.Dolly Partons Imagination Library began in 1995 and grew into a program that mailed free books to children around the world. On the surface, that is a story about generosity. But underneath it was something much more personal. Her father could not read or write, so literacy was not just a cause to her. It was something she understood could change the direction of a persons life. She did not simply give money away. She connected her resources to something she deeply cared about and created a way for that impact to continue. For the rest of us, the scale may be much smaller, but the idea is the same. Maybe what matters to you is helping a grandchild afford college. Maybe you want to support your church, a local organization, or a cause your family has always cared about. Maybe you want to make sure a child or grandchild has opportunities you did not have. The question is not always, How much can I leave? A better question may be, What do I want what I leave behind to accomplish? Dolly Invested in Her Hometown. Legacy Can Be About Where You Came From.Dolly never forgot Sevier County, Tennessee. She built Dollywood there, helped create jobs there, supported families there after devastating wildfires, and made her hometown an important part of her charitable work. She could have taken her success anywhere. Instead, she kept investing in the place that helped shape her. That is another important lesson about legacy. It does not have to be global to be meaningful. It can be incredibly local. It can be the family property you hope stays in the family, a community organization you want to continue supporting, or simply a desire to help your children and grandchildren stay connected to the traditions and values you grew up with. Sometimes the most meaningful thing you leave behind is not the size of the gift. It is the connection behind it. Dolly Protected What She Created. Legacy Also Requires Planning.One of the smartest things Dolly Parton did during her career was maintain ownership of her work. When Elvis Presley wanted to record I Will Always Love You, the deal reportedly required Dolly to give up part of the publishing rights. She declined, and years later, that decision became enormously valuable. There is an estate planning lesson in that too. It is not enough to build something. You also need to understand what you own, how it is titled, who will receive it, and whether the plan you created actually works with the assets you have. We see this all the time at Bellomo & Associates. Someone has a will, but an old beneficiary designation says something different. Someone creates a trust but never gets assets properly connected to it. Someone assumes the house will automatically go where they want it to go. The intention may be good, but good intentions are not always enough. Dolly protected what she built. Families should think about doing the same. Dolly Gave While She Could See the Difference It Made.After the wildfires in the Great Smoky Mountains in 2016, Dolly helped provide monthly financial assistance to families who had lost their homes. She did not wait for some future date to make an impact. She gave while she was here to see what that help meant. That is a beautiful part of legacy planning that people sometimes overlook. Not every gift needs to happen after death. Sometimes the most meaningful way to help someone is while you are still here. Maybe that means helping a grandchild with school. Maybe it means helping a child buy a home. Maybe it means spending money on experiences with your family instead of focusing only on leaving the largest possible inheritance. There is no single right answer. The important part is being intentional about what you want your resources to do. Dolly Left Stories, Not Just Assets.Dolly Partons legacy is also tied to the stories she told. Her songs often came from her childhood, her family, her community, and the experiences that shaped her. They mattered because of the stories behind them. Families have their own versions of that. It may be the ring your mother wore every day, the tools in Dads garage, the family Bible, the Christmas decorations, the old recipe cards, the photographs, or the cabin where everyone gathered for years. Sometimes those things have very little financial value and enormous emotional value. That is why part of estate planning should also be conversation. Tell your family why something matters. Write down the story. Explain the decisions you have made. Do not assume everyone will simply understand someday. The Lesson Dolly Leaves BehindMost of us will never have a theme park. We will not own a famous music catalog or give away millions of books. But that really is not the point. Dolly Partons legacy was not powerful because it was expensive. It was powerful because it was intentional. Literacy mattered to her. Her hometown mattered. Her family mattered. Her music mattered. Helping people mattered. And over and over again, she made decisions that reflected those priorities. That is something every one of us can do. Your estate may be large or small. You may leave behind a home, a retirement account, some savings, family possessions, or simply a lifetime of memories. The question is not whether it is enough to matter. The question is whether the people you love will understand what mattered to you and whether you have put a plan in place to protect it. At Bellomo & Associates, we help families think beyond simply, Who gets what? We help them think about the bigger questions: What do you want to protect? Who do you want to help? What burdens can you remove from your family? What do you want the people you love to understand? Money may be part of what you leave behind. But money is not what makes it a legacy.